stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[harboy]

Hi.. my question is..... in anyone's experience what have you learned to look for when reading your blood work?
Does anemia go hand in hand with chiari?
Does your immune system respond to chiari?  

I feel that there is something else underlying with my daughter and I don't know where to begin to play detective.
(as I have mentioned-no insurance)

thank you,
Cindy

[harboy]

thank you Selma for all the definitions.
im taking lots of notes

[selmaS]

I see you figured out how to use the forum a little better and I had the other question deleted.....

It can be very difficult to get Drs to listen so then it can be even harder for family and friends to listed and believe...as it is an invisible condition, they can  not see it, therefore it does not exist....

Where are you from, as I might be able to direct you to some Drs to research for your area....finding the right Dr is key and that does not mean a Dr that has heard of Chiari...but one well informed and experienced.

[Ogott]

Thanks. I'm not the only one. Have actually been having symptoms for 1 1/2 years but no one seemed to believe me. Now that it has gotten much worse they are starting to take me seriously. The ears ringing is one of the worst because it never goes away. Just keeps getting louder

[selmaS]

  Hi and welcome to the Chiari forum,

  Yes to all of them.....not my knees so much, but my ankles......

The lights going off then back on is just how my NS described the drop attacks I had, when CSF  gets obstructed it is like a switch is turned off then back on...it is so quick you are not aware it happens but with a drop attack you may be mid fall when it comes back on and wonder why you are falling...what you are feeling may be very similar but not a complete shut off so you are feeling it....

I hated the eye twitching, it could go on for days at a time...and the ringing in the ears....I am always asking ...do you hear that....lol...no one else can of course...but there are times it is so loud I think it is from outside my head,....lol..

Know you are not alone....if your MRI does verify Chiari then educate yourself on it and ALL related conditions and research Drs, having the right Dr is key !!

[Ogott]

Just had ct revealing chiari malformation. Been having pressure from back of scull. Dizziness. Weakness. Gets worse as day goes on. Also have strange sensation like my brain is going to just shut down. Like when the power almost goes off but then comes back on during a thunderstorm. Does anyone else have that? Also feels like i am moving when i am sitting. Have mri scheduled tomorrow morning. Hopefully will get more answers. Have many other problems. Eye twitching ears ringing trouble concentrating nausea and intestinal pain. Anyone else have these?  Oh and knees buckling